When A Warrior Passes

Honestly, I have wanted to write this post for a good two months, but it has been difficult to write.

You know once you have transported to the world of chronic illness that one day you will be devasted when someone passes away. However, you are never ready enough for that moment.

I had expected to eventually lose someone in a Facebook support group not someone I went to school with. Two weeks before she passed I ran into her mom while food shopping. I barely remember anyone from high school and it is embarrassing as well as frustrating for me. But when her mom said her name I could picture her sitting next to me in middle school. I had assumed she moved not that she was chronically ill with at least one of my illnesses. I promised her mom I would talk with her and we could hang out. Her mom said they were attempting to get her paired with a service dog. I was so excited at the possibility of having an in person chronically ill friend my age.

I didn’t hesitate finding her on Facebook.I tried to be patient waiting for her to response constantly reminding myself she was flaring. Within hours I found out I was too late and it broke my heart in a new devasting way. I immediately regretted not connecting with her sooner. I know she suffered way too long and things were horribly unfair. She should be going to college and building a life for herself.

Lossing someone who has one of your illnesses or who is chronically ill is extremely different. I have balled my eyes out many of times for a life of a fellow warrior that I barely knew. My heart goes out to the families in a unique way.  I might not have known them well or maybe not at all yet I live a small part of their story. I live the pain, doctors, symptoms… the life of a spoonie.

The grieving seems to be unique to those with chronic illness. There is an element of guilt for living because you know it could have been you. You wonder why it was that person, what if someone listened better, could it have been avoided, or will that be me one day. Frustration with the health care system at times.  Angry with the people who brush us off.

It has been a few months but from time to time she’ll come to my mind. I wish I remembered more about her other than her pretty hair and sweet voice, like an actual conversation. This death has been completely unique in the way it affected me.

Anytime someone passes with a chronic illness around your age it hits home and it is difficult. When you lose someone to chronic illness allow yourself time to grieve. If someone in the chronic illness community you know passes find a special way to say good bye and to pay your respects. When a girl passed with IBD a few weeks back, I found great comfort in leaving her family a message on an online guest book in honor of her.

Regardless of how close you were let yourself cry if you need to.  Give yourself permission to get angry, to feel hopeless, or broken. Emotions are healthy. They are indicators of things going wrong and of heartbreak. However, emotions are not your dictator so once you have allowed yourself to feel you need to slowly move forward. Allow yourself to heal slowly. Seek support from others who are chronically ill, family, and friends. Cherish each moment in life and live them to the fullest as best you can.

 

 

Advertisements

Shake it Off

Living with a chronic illness is a challenge beyond words when encountering people who don’t understand. We have all had an experience of rudeness beyond belief. There are stairs when taking medication in public. Rude remarks when using a walking device. 

 I cannot tell you how many times people have been disrespectful or stared at me because I use a wheelchair in a store. The majority of the time people either stand in front of me, unwilling to move or practically run away. People act like I have the plague. I have heard over the few years I have used a wheelchair in a store that I am too young to use one or too pretty. The stairs and remarks make me feel like I owe people an explanation. However, I do not need to explain my life to everyone I encounter. If the right doors are open to education someone I don’t mind but there shouldn’t be a social pressure to explain it all. 

 Many people doubt the intensity of our pain and they question if we are indeed really sick. No one seems to understand battling against your body and taking care of yourself is a full-time job. Simple tasks are draining. Some people go out of their way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.

 

Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strangely towards us. 

Too often people judge us before they get to know us. People treat us at times like we are nothing or are stupid. 

Too often we hear phrases like: 

But you don’t look sick

You need to be more positive

Have you tried…

You’re too young to be sick

It must be nice not having to go to work/school

You’re just having a bad day

You need to get more exercise

It’s all in your head

Maybe if you got out more

These things get under a spoonies skin, to say the least. When people mistreat you, SHAKE IT OFF. It is not your fault. Don’t let them get to you. You are an amazing person. Even though you are ill, you are so valuable. You have so much to offer this world. Shake off the stares, Shake off the negative and nasty remarks, Shake off the heartbreak…. Shake it off.. It’s gonna be alright

Hold your head up high, cause it’s gonna be alright. You have so much courage. You are an inspiration for thriving despite every setback. Sending lots of spoons, prayers, and hugs. ❤

Introduction to Psalm 5

It is simply an honor that you have dropped by! My prayer is that you will be a little encouraged or learn something here. This is a simple introduction to Psalm chapter five. Furthermore, look out for the next Psalm five post coming soon!

“The various psalms reflect nearly every human emotion: unbridled joy, deep-seated jealousy, seething anger, hope, and depression. These are only a few of the emotions behind the poetry we hear expressed in individual psalms. Feelings and emotions are central to what it means to be human. We cannot escape them nor should we. Psalms invite us to take the emotions we feel and bring them before God. This book model how to come before God in times of sadness, brokenness, and joy. Psalm 5 is a cry for help and a plea for guidance by a person who suffered at the hands of an enemy. It talks about the morning as the time to pray and listen for God to answer. Like many laments, it begins with a cry but ends in confidence.” Biblegateway.com

Psalm Chapter five is an emotionally rich chapter, yet consists of only a few verses. Another sorrowful Psalm crafted by David as he fled from Saul. His mature faith shines throughout the chapter as he not only pours out his heart to God but also praises Him. This Psalm is parallel to 1 Samuel 18-20, which I highly encourage you to read as well to gain a deeper understanding.

1962835_633664076743644_6717678254501268620_n

 

 Clearly, this is a prayer, furthermore a brief overview of how our prayer life should look. Prayer is a complexly beautiful gift extended to us. “Words are not the essence but the garments of prayer.” In addition, prayer is longings beyond words, worship, and listening with a still heart to God’s voice. “Moses at the Red Sea cried to God, though he said nothing. Yet the use of language may prevent distraction of mind, may assist the powers of the soul, and may excite devotion.”

“Utterance is of no avail without heart, but that fervent longing and silent desires are accepted, even when unexpressed.” Humans make prayer into something formal with rules that Christ never intended. Perfection is not an element of prayer, yet it is accomplished in the Fathers eyes when we are seiner. I love how Rachel Wajo puts it, “you have permission to ache freely.” Christ desires for us to pour out our hearts. For us to share with Him every detail of every element of our lives and to share every emotion. He desires your heart even though it is not in perfect condition, even if you feel it is shattered and stained by sin.

It can be tempting to pretend that we have it all together and are just a step away from perfection. Aiming for the perfect body, perfect career, perfect family, and perfect relationship with Christ. Society has us in the mind frame that we can achieve perfection. The media whispers that everyone but you has it all together. We don’t want to be a burden to those around us so in a way we isolate ourselves in pretending it is all fine.

Lord,

We proclaim how great you are and tell of the wonderful things you have done. You are our strong defender. Our source of life. You have blessed us beyond understanding. All honor, glory, and praise be to Your name now and forever.

We praise You for the holy gift of Your word. Enable us to cherish it and engrave it on our hearts. Let us see clearly so that we may take in the amazing things coming from Your Word. Open the eyes of our hearts. We are eagure to receive Your Word. Bless us with understanding. Help us to apply Your Word to our life today.

Amen

 

Spoonful of Spoonie Encouragment

Mornings for those with a chronic illness are a struggle beyond words. Waking up and willing our bodies to function is a fight. Here is a spoonful of encouragement for spoonie warriors. Happy Monday, brave friend!

You have victoriously made it out of bed this morning. The symptoms and pain are already overwhelming, but you’ve got this. You only need to take today one minute at a time. You have all the strength you need, even though it might not seem that way. Anxiety and depression attempt to dictate your day. Take a breath. Take a break.  Get some rest. Keep fighting to make today the best day possible.

You have been chosen to walk this path. It is one filled with heartbreak, disappointment, and setbacks. Walking the path of someone who is chronically ill is a challenge to say the very least. Being sick has most likely disrupted your flawless rhythm with life. It has stopped you dead in your tracks. Your illness has tried to toss your dreams out the window.

Though this path is difficult, I assure you there is a lot of beauty to be discovered. Sure life is not what it used to be, but the song you sing is just as beautiful. There is hope, joy, love, laughter, and life to be found on this path. You will be able to recreate your wonderful dreams. You are still you, despite your illness. You are an amazing and beautiful person with a flawless story and a huge purpose.

    There will be days that you become overwhelmed and feel completely alone. Your feelings are understandable, however, I promise you, you do not walk alone on this path. There are people who care about you, people who understand how difficult the journey is, and people who want to support you.

I am proud of all you have accomplished. I know you will thrive today. This week will be lovely simply because it is the only choice. While you don’t need to be positive all the time you need to take baby steps forward. You are doing amazing. Raise your coffee (or tea) to a great week warrior!

Meaningful Words

This poem is dedicated to all the courageous chronic illness and emotionally ill people who have tragically lost friends. To all, those who have encountered broken promises. You are so much stronger than you will ever understand.

Meaningful Words:

Don’t say I love you

If you’re going to walk away

Don’t say you care

If you’re not going to be there

 

I have heard it all before

No strength to listen to the lies anymore

You can just walk away

No one is making you stay

 

Walked out in my time of need

Refuse to plead

Don’t say you care

If you’re not going to be there

 

I am strong I will

I will just move along

Surviving without you

There is nothing I can do

 

 

Bittersweet Birthday

I had overheard people saying that old age caused pain. So, by the time I had chronic pain, about nine years old I thought it was I just a part of the aging process. At the same time, I wondered how everyone else was coping so well with the pain and mine was taking over. I felt extremely guilty for missing an excessive amount of school. It took some time for me to understand that children should not be in intense pain or pain all the time. Those people were indeed referring to elderly people. Who knew?

From a fairly young age, I associated growing up with having more pain. I am thankful to be alive. Especially in light of a handful of times, it was questionable if I would make it. Even so, my birthday is a little difficult emotionally.

It’s not just the physical pain. I tend to feel more isolated around my birthday. This is the time I notice that indeed I am not a typical young adult. The time I need to grieve the things I can no longer do. Time to grieve all I am missing out on.

The social clock is ticking obnoxiously. I can just hear people saying, “She is nearly twenty-three years old. She should be out on her own, not living at home.” It is difficult for me to view my accomplishments. My brain finds it natural to highlight the struggles during certain seasons. Society, as we know, has too many unneeded options. I have learned to allow comments to roll off my back, but sometimes it has a way of getting under my skin.

Furthermore, I have found that the older I have become, my memory has faded. The brain fog is thick. I was devastated when this began to happen. Heartbroken as the memories of my furry friend slipped out of my grip.

It is okay to struggle with holidays or your birthday as someone with a chronic illness. It is okay to have fears. It is okay to not be okay. As long as you do not give up. Even when you don’t feel like it, hold onto hope. Crawl forward, even if you are slower than a snail, you are still making progress.

Even though it is emotional, there is a part of me that looks forward to my birthday. I am deeply blessed to have people in my life who support me and love me. I am thankful for days of simple joy and laughter. The Lord has allowed me to thrive in the midst of great adversity.

“For You shaped me, inside and outYou knitted me together in my mother’s womb long before I took my first breath. I will offer You my grateful heart, for I am Your unique creation, filled with wonder and awe.You have approached even the smallest details with excellence; Your works are wonderful, I carry this knowledge deep within my soul. You see all things; nothing about me was hidden from You. As I took shape in secret, carefully crafted in the heart of the earth before I was born from its womb.You see all things; You saw me growing, changing in my mother’s womb; Every detail of my life was already written in Your book;
You established the length of my life before I ever tasted the sweetness of it. Your thoughts and plans are treasures to me, O God! I cherish each and every one of them! How grand in scope! How many in number!” Psalm 139:13-17 The Voice Translation 

Hope

New Year’s sweet bells of hope ring loudly as January launches. Fervently we compose resolutions so that this year will be astonishing. However, the sweet song evaporates. Leaving us in silence by mid-January as we waltz back into the reliable beat of everyday life. Focus is no longer aimed at hope or the resolutions. Slither into daily calamities, apprehension leeches on, despair dangles overhead, and sorrow is deep.

Providing joy, strength, and adding depth to our relationship with Christ. Despite heartbreak, pain beyond comprehension, and when our world seems to be crumbling before our eyes there is always a spark of hope. It is not always instinct, but then again living the way Jesus called us to is anything but natural. As Christians, we are required to battle our flesh. In addition, we are to fight to remain firm in the hope Christ provides for us. It is a daily fight. Let me assure you, my precious friend that the reward is immeasurable.

valentine-1953964_960_720.jpg

How would you, dear friend define this simple word hope? Appearing frequently, it is engraved on our hearts. Yet we need a reminder of the biblical definition so that we resist conforming to the world’s definition of hope. Additionally, so that we remain steadfast in Christ and transformed by Him.Bible.org defines hope this way, “Hope” in Scripture means “a strong and confident expectation.” Furthermore, there is a clear element of trust throughout Scripture when hope is examined. Moreover, I find it essential to highlight the usage of hope in the New Testament, which I found on Biblestudytools.org. “The New Testament consistently uses the verb elpizo [ejlpivzw] and the noun elpis [ejlpiv”] for hope.” Both words here are Greek.

 

Elpizo is defined as (30 times in NT)1. to hopein a religious sense, to wait for salvation with joy and full confidence2. hopefully to trust in.png

Additionally, hope molds our character, providing joy, peace, confidence, endurance, strength, courage, and comfort. Expanding beyond our dreams when we are consistently feasting on the Word of God. Furthermore, our hope cultivates as we become consumed with the Holy Spirit.Perspectives are transformed by hope as it gives new light to an existing situation. Likewise, it modifies the way we view ourselves, transforms what we value, and affects how we spend the gifts God has graciously entrusted us with such as time and talents.

Practically, how do we remain anchored in hope when our circumstances are screaming give up? When we continue to receive one piece of bad new after another. As mentioned before, we must continuously feast on God’s word. In addition, it is vital to the health of our hope to spend time simply in  Christ presence. Additionally, prayer provides a path to the renewal of hope. Various books, sermons, and worship songs can be an asset. Lastly, we can remain anchored in hope by leaning on Christian friends.

Lord,

Rekindle our weary souls with fresh hope. Fill us with Your HolySpirit. Enable us to have a deeper understanding of Your hope and of who You are. Regardless of what we face enable us to remain steadfast in hope. We praise You for the hope of salvation found in Christ Jesus. Blessed be Your Holy Name.

Amen

 

 

Joy of Advent

All is merry and bright with absolutely no rest in sight. The to-do list has doubled, in oh so much trouble. Going through the motions as frustrated tears construct an ocean.

“I know You’re good, but this don’t feel good right now,” can you relate to that phrase this advent season? Daily adversisty sets questions into motion. Why is this happening? God where are you in this? The heartbreaks you are working through weigh you down. And yet it is time to transpose our focus to joy despite the emotions pulling the opposite direction. Regardless of the gut instinct to curl up and compose a pity party (Though at times a short one is needed). On this side of heaven there will be trouble, but that is not a stop rejoicing card. “Even if the fig tree does not blossom and there are no grapes on the vines, If the olive trees fail to give fruit and the fields produce no food, If the flocks die far from the fold and there are no cattle in the stalls; Then I will still rejoice in the Eternal! I will rejoice in the God who saves me!” Habakkuk 3:17-18

Thankfully delighting in the Lord is not dependent on our emotions or the events unfolding in our lives. The joy of Jesus entering the world is at the heart of Christmas.  Indulging in Jesus’ presence will flood your heart with Him. He will renew your mind, direction, emotions, and spirit. Furthermore, we find true joy simple in His character- in His righteousness.

The breastplate of righteousness protects our spiritual heart, espically during the advent season. There are numerous fun things to engage in such as movies or holiday parities both laced with temptations. “Guard your heart above all else, for it is the source of life” (Proverbs 4:23 HCSB). In order to grow closer to Christ and experience His full joy this advent season we must guard our hearts.

By the precious blood of Jesus Christ you are made righteous. Salvation is secured. We can celebrate this. “The third candle on the Advent wreath is called the Shepherds’ candle. It remembers the first in a long line of people who joyfully shared the good news of the Savior’s birth” ( George H. Vander Weit). Furthermore, we hold on to the truth that Christ will return someday soon. Our candle this week in the advent wreath is pink, which is to remind us that our wait is half over for the return of our beloved Savior.

todayi am (4).png

How can you put on the breastplate of righteous this advent?

Soverign God,

We rejoice in the birth of Your Son, Jesus Christ. In all He has freely given to us. Consume our hearts with your joy this advent season. We praise You for Your Word. Help us to put on the breast plate of righteousness daily. Equpit us. Provide all that is needed. We find joy in who You are. In Your faithfulness. In Your righteousness. In Your love. We rejoice in all the blessing You have poured into our lives and continue to do. May we remain focused on the heart of Christmas. We delight that our wait will soon be over and that we will spend eternity with You. Draw us closer to your heart this advent season.

Amen.

Emotional Health: IBD

Personally, I don’t like the words mental health. I feel like it has a negative perspective in society and is associated with more or less being crazy. I prefer the term emotional health, yes I am aware there isn’t much difference but that’s what I call it. Anyways. This post isn’t about which term is better. Today should have been yesterday’s post but the day slipped away from me. We are talking about emotions and IBD. There are dozens of aspects of emotions with chronic illness in general. I am going to just survey this topic in this post and attempt to keep it short.

Everyone is unique in their illness and emotional health. When a person gets emotional sometimes, the medical field blames everything on the emotions not acknowledging it’s a balance. From a clinical point of view, personally, I have low scale anxiety. I had clinical depression as an adolescent, but do not right now. That does not mean I don’t feel depressed at times. It means it isn’t a chronic aspect of my battle that impacts daily life. Most medical professionals cannot understand why I am not mentally unstable, but I say go with it.

Medications impact emotional health as well. Last year, I went through a season where I had no emotions. At least that’s what it felt like. I had went into survival mode than high doses of Prednisone and my emotions went on vacation.  In addition, medication can change how you look which in turn impacts your emotional state.

Even though I am not diagnosed with severe emotional disorders, it doesn’t make the emotions easier to cope with. There are countless emotions that come with medications. Tons of stress and frustration from doctors. The isolation of illness. Not to mention the anxiety that is through the roof. Anxiety with where are the bathrooms. Will I have an accident? Will I be alone forever? How am I going to work? Will it ever get better?Logically I can answer these questions but during an anxiety attack logic only gets you so far.

Learning how to cope is a journey with emotional and physical health. Talk with someone you trust or write. Releasing the emotions is helpful. Being creative is good for emotional health. Many people draw, color, or listen to music. I am a fan of online support groups as well as raising awareness for my illnesses. The Crohn’s and Colitis Foundation also has helpful resources for mental health. In addition, you can check out this Patients Discuss Impact of IBD on Mental Health video. Lastly, a big key to my stability is my faith. It does not necessarily cure an emotional disorder but it makes it more manageable.

 

when-you-feel-not-good-enough.jpg

When Chronic Pain and Illness Take Everything Away: How to Mourn Our Losses

51tf0jkwqxl-_sy346_ girl-1770830_960_720.jpg

When Chronic Pain and Illness Take Everything Away: How to Mourn Our Losses is a practical book for anyone who battles a chronic illness or chronic pain. Esther is an inspirational individual who has thrived in many aspects of life despite chronic illness, without a doubt she is a role model. Reaching out as a compassionate friend she gently teaches her readers about the grieving process and coping with chronic illness and chronic pain. She is transparent with her faith journey as well as her struggles and victories.

water-lily-1592793_960_720

Grief is an overwhelming aspect of chronic illness that threatens to take over. It breaks a person down. Those facing chronic illness and chronic pain grieve the person he or she was before the pain, their past, broken relationships, shattered dreams, and the person they had hoped to become. Chronic illness alters every element of life. At times, with the pain and additional symptoms, those with chronic illness don’t want to deal with the emotions. However, emotions are healthy and a part of life.

autumn-photoshoot-1759696_960_720.jpg

Personally, the emotions tend to hit me like a ton of bricks in a delayed reaction. Grief with chronic illness was no different. I get consumed with daily life not processing what I am going through on an emotional level. Maybe you can relate. Once the emotions hit it is overwhelming. I officially got my diagnosis in my late adolescent years. I took a season to grieve all the things I missed out on like prom and mission trips I had planned out. That season I grieved the friends I lost.

I have worked through a lot of the grief but there is still some work to be done. Support is essential when working through it. This book provides a positive outlet for grief. One of my favorite things is that there are writing prompts to assist the reader in constructively working through emotions.

wooden-bridge-919081_960_720.jpg

Amazon description: “Chronic pain, illness, and disability take so much away. Sometimes it seems as though they take everything we have ever loved and held dear.

Our physical abilities and our jobs. Our current passions and future dreams. Our finances and our friends. Our sense of community and our ability to engage the world in ways we could before.

Chronic pain takes away our sense of self and who we always thought ourselves to be. How in the world are we supposed to deal with this fact?”

Make sure to pre-order your book here! In addition, feel free to drop by Esther’s blog: Life in Slow Motion.